irishfield Posted October 29, 2014 Author Report Posted October 29, 2014 (edited) Thanks guys... back on the road we go. Mt Sinai Monday to see her Medical Oncologist... Doctor conference Tuesday (between Sunnybrook / St. Mike's / Mt Sinai) and then Sunnybrook Wednesday to see her Radiation Oncologist. From there, what ever plan they've put together... At least we all got a full summer in this year, for some much needed RnR, and Jennifer actually got to have some fun on the little water slide that I built for her at the lake. Edited October 29, 2014 by irishfield
ketchenany Posted October 29, 2014 Report Posted October 29, 2014 Incredible!!! She is cutting the path for those to follow... X2
Whopper Posted October 29, 2014 Report Posted October 29, 2014 That is one heck of a summer project Wayne and probably worth every smile.
paul_614 Posted October 29, 2014 Report Posted October 29, 2014 Thanks guys... back on the road we go. Mt Sinai Monday to see her Medical Oncologist... Doctor conference Tuesday (between Sunnybrook / St. Mike's / Mt Sinai) and then Sunnybrook Wednesday to see her Radiation Oncologist. From there, what ever plan they've put together... At least we all got a full summer in this year, for some much needed RnR, and Jennifer actually got to have some fun on the little water slide that I built for her at the lake. I'm free for adoption
fishnsled Posted October 29, 2014 Report Posted October 29, 2014 Hoping for nothing but good news from the doctors Wayne. Love that slide!
irishfield Posted October 29, 2014 Author Report Posted October 29, 2014 LOL Paul.. thanks guys, it only took me about 3 weeks @ 7 days a week, 7 hours a day. Great mind distraction! Leah's a bit scared though... as I still have some hill left beyond the top of the current 173 feet of slide!
irishfield Posted November 4, 2014 Author Report Posted November 4, 2014 (edited) Can't believe that I started this thread 4 years ago.. and we are once again in wait mode. Today's trip a waste of time to her medical oncologist, they could have just called her on the phone to tell her she'll get a full body CT NEXT Monday instead of making her ride in a truck for 5 hours. Why it wasn't booked for today is beyond me as the appointment was arranged a week ago Friday. Conference between hospitals still tomorrow, as far as we know, and then Sunnybrook Wednesday afternoon where she'll hopefully get a direction from the radiation oncologist on everything above her shoulders. At least she'll be getting her staples out of her head if nothing else. Edited November 4, 2014 by irishfield
Old Ironmaker Posted November 4, 2014 Report Posted November 4, 2014 Incredible strength, just amazing. God is that being that I don't believe in however am sure afraid of.
bigbuck Posted November 4, 2014 Report Posted November 4, 2014 Sometimes there is no making sense of how things are done. Frustrations and the like. I am 2 years in and my family doctor has yet to see anything on my file here from Credit valley. Hang in there. Wasted time is no big deal as long as there is progress. Jen is one of the strongest willed people I have ever come across and I have never met her in person.
Terry Posted November 4, 2014 Report Posted November 4, 2014 well you have become an expert at hurry up and wait
irishfield Posted November 4, 2014 Author Report Posted November 4, 2014 Like I said Terry.. I can do it all day every day now, it's an unfortunate mindset you have to get yourself into or you'll have a coronary. It's Jen with only one hip to sit on, and the lack of comfort in the truck, that gets me pissed off with these Doctors. That and the fact that none seem to realize the real world situation of $100 in gas + $24 in parking (let alone a lost day) vs just making a phone call to tell you to come in next week instead.
glen Posted November 4, 2014 Report Posted November 4, 2014 Do they get paid when you go in VS not paid for call?
irishfield Posted November 4, 2014 Author Report Posted November 4, 2014 Doubt that's worth the $76 for them Glen... it's just lack of thought.
irishfield Posted November 11, 2014 Author Report Posted November 11, 2014 (edited) VERY efficient today! Left home at 7 am.. Into Mount Sinai Hospital at 9:25.. Jen drank her Barium and was already out of the full body CT scan by the 11am that she was supposed to go in at! Went upstairs to move the Doctor consult to Tuesday... told "closed Tuesday but I'll go see see if he can fit you in now". We told Natalie that we had to leave by 1 at the latest, as Jen had to be at Sunnybrook no later than 2! Saw Dr. Razik and were on our way by 12:15. Razik looked over the scans himself and couldn't see "anything that concerns me", but of course we still need to see the official radiologist report by weeks end. There is one spot in a lung... but he says it matches the scans from back in January so suspects it's just scar tissue that he'll monitor. Considering she's had 3 lung xrays since January, that were deemed "clear", and he compared todays CT to January's CT it sounds like this spot should be a non-event. We then drove to Sunnybrook and grabbed some lunch in the food court and then went into the Odette Cancer Centre by 1:45. Sat for a whole 5 minutes and were taken in immediately to see Dr. Sahgal. Dr Sahgal says there's nothing new on the MRI that was taken last week... so he is just doing "preventative" Stereotactic Radiation on the area the two tumours were removed from about 3 weeks back. His stats say without Radiation there's an 80% chance of re-occurance and with radiation it changes things down to a 20% chance. All in all this is great news as before starting the last round of Radiation, in July 2013, Jennifer had already grown a couple new skull tumours and her brain tumour had started to grow again within the 3 weeks since surgery to remove same. After the Doctor consult Jen had her plastic mesh "clamp down" mask made (that holds her still on the radiation table) and the required CT that goes along with that, to mark focus points on it for the radiation technicians. Jen then picked up her appointment card and we were back in the truck by 2:55 and home at 5:05! Radiation next week, each day Monday to Friday. Gas for the truck $75 Parking today $43.75 ($20 Sinai... $23.75 Sunnybrook) Lunch (Pizza Pizza) $28.35 Todays news.. Priceless Edited November 11, 2014 by irishfield
Steve Posted November 11, 2014 Report Posted November 11, 2014 a very positive update !!! great news ... and keep kickin' arse Jenn!!!
spincast Posted November 11, 2014 Report Posted November 11, 2014 That is just awesome , and well deserved, news. Fingers crossed that your numbers continue to move in the right direction, maybe some day soon this thread can end with a final "all clear". Here's looking forward to that day
irishfield Posted November 11, 2014 Author Report Posted November 11, 2014 Thanks guys! Rick, I hear what you're saying... but hopefully this thread never ends. She'll be on 3 months at a time for the rest of her life and will never be given an "all clear". As it is, nobody has seen someone survive this many Ewing's tumours. She has them all baffled and will hopefully continue to do so !
bigbuck Posted November 11, 2014 Report Posted November 11, 2014 Good Day!!! Good news is the absolute best news!!! That little girl of yours is something else. It is great when the docs are lined up and get their thing done quickly. Keep the good news rolling.....
Old Ironmaker Posted November 11, 2014 Report Posted November 11, 2014 I'm sure you have considered it but the \Canadian Cancer Society will drive to and from all the appointments for a one time charge of $100.00. I have friends that drive and those that unfortunately need the service. There aren't many that have those expenses in the budget or able to take the time off work. We were driving a good friend from Haldimand to London for chemo, 5 hour return plus expenses. Once he was comfortable with the whole shock to his system he chose to have him driven with the service. Prayers are with you. I am one of the lucky ones.
motv8tr Posted November 11, 2014 Report Posted November 11, 2014 Great News Wayne, and I'm glad to hear you guys had an "easy" day at the hospitals compared to past visits. Maureen
bpsbassman Posted November 14, 2014 Report Posted November 14, 2014 Good to hear good news Wayne. Jen is a true inspiration.
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